Foolish action (probably)- advice needed please
Posted , 8 users are following.
Hello All
This is my second post, and I hate talking about myself, but thought I would come to you all for advice. I would much prefer to just reply to other peoples posts in a supportive way and hope therefore that this will be my last post about me!!
My first post gave background on me..summarised as having been diagnosed recently with confirmed PMR, although had the problem since Dec 2010. Have been on 40mg pred daily for some time. Had stopped or reduced steroids, on or off over time, in the forlorn hope that the PMR had gone away. Silly me, everytime I took that route the PMR came back with a vengeance.
My Rheumy has put me on a reduction plan to go from 40mg a day to 30mg a day. To then stay at 30mg until I see him in 3weeks time when he hoped to put me on to 20mg a day, where he thought that that level would be my maintenance dose. He said that he thought I would be on that level for quite some time, maybe a year or so, and then he hoped that the PMR would begin to burn itself out over time and I would be on a lower pred dose for a couple of years until the PMR went totally.(hopefully!)
Having read the many posts on this forum I quickly realised just how important it is to be on the lowest dose of pred possible. So rather foolishly maybe, or very stupidly, or downright dangerously, I gave the matter some thought about 5 or 6 days ago.
The rheumy had me on what I will call a 'top down' strategy of lowering the dose from a high 40mg to find a level that would be my maint dose. Which may well have turned out at 20mg daily. I thought that I would try the reverse of that.... I would adopt a 'bottom up' strategy and start on a low dose and flex that up over time to find a level that I could cope with body wise and hopefully would not give too many adverse side effects.
So as of 5ish days ago I started to take 5mg daily and not the 30mg I was on (prev 40mg). I felt awful with terrible virus type feelings, and of course the PMR saw its chance and came back strongly over the intervening days. Whereas though the full PMR originally was in my neck, shoulders, back, hips, thighs, and arms .... over the last couple of days or so it is mainly evident in my forearms, biceps, shoulders, and rear thighs. My forearms have been excrutiatingly painful, and I can hardly hold any weight in the arms as a consequence, even to hold a phone up is too much. And as for my rear thighs, getting out of a chair is becoming very very difficult. So it is clear to me that 5mg is no good as a maint dose for me, so I have upped that to 7.5 mg from today. My plan is to keep it at that level for 3 or 4 days and if the forearms and thighs do not improve I will keep upping by 2.5mg a day (have 5mg tabs which I cut in half) until i find the dose that works. Hopefully less than the top down route which may well have left me on 20mg for a considerable time.
I note from the many posts that it is important to get to as low a dose as poss, and this 'bottom up' approach will allow me to find that level. Obviously as I am in the fairly early days of this dreaded PMR I have to honour my body and find a dose that works. I could easily go back to 40mg which was a miracle cure for me...but I have to balance that with the side effect points and therefore find a dose that may not take away all pain etc but will at least allow me to move ok.
I tried the 5mg as a start point for my plan, based on the points made about the body producing its own 7.5mg level of cortisone.
I feel better virus wise now, so I think that I am over the worst and its now a case of finding my maint dose in a way that delivers the body benefits that I desperately need, without triggering too many side effects of the steroids.
A few questions please:
1 - When I took the 5mg of pred would my body still produce the 7.5mg naturally, meaning that I would have had in me 12.5mg... or would the body only produce the shortfall of 2.5mg. I accept my body may be producing nothing at the moment due to adrenal gland shut down. But as I used to start and stop steroids I hope mine is still working albeit intermittently!
2 - What is the sensible 'tipping point' for raising the steroid dose. Obviously as I was on the 5mg I had no choice but to raise as my forearms were terrible and my rear thighs likewise. But should i keep upping the dose until they clear fully or until they are bearable. Do I cause them long term damage if I end up on 10mg of pred and those muscles are ok but still hurt a lot but i can cope with it...or should I raise the dose until they are very alright!! I dont know if I will damage them long term if I stick on too low a dose for a year or so and the pain and stiffness is too great... versus having a higher dose with the pain much reduced, but risking greater pred side effects
3 - Is 3 or 4 days in between my 'bottom up' raising the dose ok. I knew the 5mg dose was woefully inadequate very quickly as the full force of the PMR returned. I know there can be overlap between steroid withdrawal symptoms and those of PMR..but I know the 5mg is not strong enough. I may well end up in similar position to what the rheumy feels with a 20mg maint dose, but I hope the 'bottom up' route will allow for the lowest possible dose that works to be found. I have mentally set a goal of 10mg as the maint dose which is half of that the the cons feels I may need. I know I will have some pain and stiffness at whatever level I end up on, and it is finding that balance of acceptable pain v side effects.
4 - Am I risking CGA developing by doing this 'bottom up' route and thereby allowing the PMR to gain a stronger foothold, and risk CGA starting also, due to the drive for the lowest dose of pred possible.
5 - I am going to re-start gentle walking etc (felt too bad since I dropped to 5mg, and besides was oh so depressed mentally )... and does jacuzzi type heat help at all. I cant swim sadly but if heated water would help I could do that also.
6- Is dosage affected by size etc. eg I am a 55 year old male, 6 foot 4 inches tall, weigh 15 stone (was 14 stone pre pred ), although I am still in quite good shape visually at least.... well from a distance anyway!! Would a 5mg dose for a lady for example be the same as a 10mg dose for me.
Thank you to all who read this... and I know that by doing a full u-turn from top down dosage to bottom up dosage is not a clever thing to do, aspecially in a space of a day or so. I will never repeat that and will treat the steroids with respect from now on.... though I am still amazed at the obvious problems that people experience from dropping from 5mg over many many months. I will of course honour your experiences and will tread very carefully whenever I can reach that level. I will stick to rheumy advice, and indeed all of your wonderful advice to the letter from now on.
I now ACCEPT that I have PMR, accept that the preds only treat the symptoms, accept that the PMR is not cured by preds, accept that I could have this for many years, accept that I cant self dose the steroids with what I think, accept that I must listen to the rheumy and follow his recommends, and most importantly of all, understand that there are many people out there, especially on this forum that know a million times better than me based on their own experiences, and therefore listen intently to their advice. All of these things I pledge, to my poor little body, to do.
Kind Regards (PS I am still sitting on the naughty step for self dosing!!)
Rob
0 likes, 47 replies
MrsO-UK_Surrey
Posted
Get yourself back up to at least 15mgs straight away! And that is if you have been diagnosed with PMR alone and not GCA. In the latter case it would need to be 40mgs. If you are unsure as to the diagnosis, then get it checked out straight away either by ringing your GP or the rheumatology department at the hospital.
You cannot start from the bottom and work upwards with steroids - they have to be taken in sufficient enough dose to get the inflammation under control at the outset and until that happens you will not recover but will put yourself at risk of GCA.
PMR and GCA both need specific starting doses whether male or female, lightweight or heavyweight!
Yes, it is important to reduce the dose to the lowest possible dose that will keep the symptoms and inflammation away BUT not until that inflammation is under control and even then each reduction has to be done slowly.
The adrenal glands do get suppressed by the higher dose steroids and they eventually start to recover when we reach a dose of around 7.5mgs.
Most importantly, once you have been on steroids for any length of time, if you stop them suddenly you can end up in an emergency situation. You cannot mess about with steroids.
Yes, gentle walking is the very best exercise you can do at the moment and many people find that moving about in warm water such as gentle aquarobics can also help. In the early days, I used a heat pad on very painful areas.
So first of all, confirm whether you have been diagnosed with PMR or GCA or both and then, if you have a GP you have faith in, take his advice.
I feel quite concerned for you.
MrsO
mrs_k
Posted
Well in five years, that one post came out of the left field.
When there is no known cause or cure for either PMR or GCA and they are classed as auto-immune illness (there are another 798). You go by what is currently known to some degree.
Put is this way, if you had a headache would you start on half a headache pill and then increase till it goes away - I think not.
As MrsO says have you been diagnosed with GCA as 40mg is normally the starting dose for GCA and its 20mg for PMR.
Go to the website www.pmr-gca-northeast.org.uk and read up on the British Society of Rheumatologists Guidelines on both PMR and GCA.
If you have GCA stop messing about and stick with what the Rheumy told you to do. Which is 30mg per day till he sees you in three weeks time.
You do not mess about with GCA - you can lose total or partial vision and once it is gone - its gone, no going back.
It is not important to get to the lowest dose as fast as possible, it is important to get to the dose where you are most comfortable at and where it is holding the inflammation at bay. Once there, then you can commence a drop pattern. But it is a long game and you cannot win against GCA or PMR - they bite back at you - you have to sneak up on it.
Be a good lad and go back to your 30mgs till you see the Rheumy establish if it is GCA or PMR, and then we can all sleep easier.
EileenH
Posted
Right, I'm not going to try to answer your post bit by bit at the moment. First I will just try to explain something that you don't seem to have grasped yet - hardly surprising as I imagine you weren't in the medical field!
First of all - you took a massive risk dropping your dose like that. Once you are on a high dose of steroids it isn't a case that your body carries on producing cortisol itself. It is a very complex feedback mechanism involving several substances and hormones but basically (since I don't know your background) as long as the right amount or more cortisol (or artificial substitute prednisolone) is present in the blood, the switch is turned off on the factory production line. So if there is enough there, the adrenal glands take the day off. The body does get used to the level of prednisolone that is there and if you drop it suddenly you can become very ill with something called an adrenal crisis which can be life-threatening. That's why you should have a blue card to carry with you at all times in case you are taken ill and unable to tell people you are on a medication you need every day. Being late or missing a dose one day might make you feel a bit ropey - but it will catch up again - but to suddenly drop the dose over a longer period like you did is very dangerous. I doubt it was a virus - that is what an adrenal crisis feels like, weak and ill. And once the adrenal glands have gone into hibernation they won't just switch on and off like a light switch - it can take up to a year for normal service to be resumed. Your rheumatologist has had you on a very high dose for a few months - the adrenals are affected after a few weeks at that level of dose.
Second, I'm afraid that bottom up won't work. The top down regimen is done so that the high doses started with reduce the inflammation quickly and achieve the freedom from pain that allows you to function again. It is partly the swelling associated with the inflammation that leads to pressure and pain. Once that inital control is achieved you can reduce the dose until you get to a point where you have achieved the balance of a dose that is just enough to achieve the best of both worlds. This reduction can be quite quick - and certainly at the dose you were started at should be. I don't know where your rheumy gets his info but he seems a bit out of touch with the most recent guidelines. It used to be that a 30 or 40mg/day starting dose was used for PMR but the consensus now is that 15 to 20 mg/day is the place to START with PMR - if you need more to achieve freedom from symptoms the chances are it isn't PMR but another form of arthritis and further thought is needed and investigation needs to be done. You are looking at it the wrong way round - get the inflammation properly under control and then reduce steadily, faster at first but slowing as the daily dose gets lower - you should not reduce by more than 10% of your current daily dose once you get down to about 15-20mg/day (i.e. 2mg at a time).
I'm not really supposed to say this on the forum but the most sensible thing to do would be to go back to a dose of at least 20mg. If that gives you considerable relief within 24 hours you could then stick there for a week and then reduce by 2.5mg/day - stay there for a week or two if that's fine and then try the next reduction. Obviously you want to reduce as quickly as possible but here you have to balance a few things - you have to let your body get used to less because you have been on a high dose for some time as well as avoiding a recurrence.
Most doctors aim for a maintenance dose of 10mg/day or less and would start at 15 or 20mg for several weeks, then reduce by 2.5mg or
RickF
Posted
These ladies are all correct. We have to be patient and work from the top down in reducing the level of Pred we take. It takes time as our bodies get used the high dose of Pred and the Adrenal glands turn off completely and stop releasing the body's normal cortisol. (Google HPA axis – which is the Hypothalamus, Pituitary, Adrenal glands).
I would get back up to at least 20mg of Pred until you get back to see your Dr. or Rheumy. Good luck and take it easy for awhile.
rjw
Posted
I know I have been silly, but I did not realise that my 'bottom up' approach was so fundamentally wrong. I will revert to top down from tomorrow. As I have done what I have done, and I am where I am, I just need to decide whether to go back to where the consultant thinks I am eg on 30mg, or whether now that I have ridden some of the storm, it would be sensible to re-start at 15mg or 20mg. (Have been on 40mg for 6 months on and off (with my previous episodes of self regulation!), 30mg for a week, 5 mg for 5 days, 7.5 mg for one day )Why did I get myself into this mess!! Never again I can promise you. Whatever I now take from tomorrow, I stick with that till I see rheumy in 3 weeks...then I confess all!! Then I stick with whatever he puts me on for however long that is.
I have tried to short circuit the disease timescale from a few years to a matter of months, and all I have done is make things worse.
I have def been diagnosed with PMR, with all other things ruled out, and with my symptoms as they were/are, and with my rapid response to steroids in a day or so. (From hardly able to move to the fluidity of a flower in the wind). I have not got CGA, or at least I hope I haven't, in fact the cons has not even mentioned it. I only know of it from this forum, and my CGA question was linked to whether I increased the risk of getting it with my silly approach to steroids, .. the answer was a yes to that!!
I have been on 40mg of pred daily since early Jan, noting the comments above, 2x calcichew tabs daily, I x alendronic acid tab weekly, and 30mg of lansozrapole daily. I stopped the alendronic acid from this week also as I read on some web pages of the risks of that. Hopefully thats ok to have done that!
I hope to feel even better in the next few days when I return to a more sensible pred dose, and then stick to it, with no more self dosage. I had promoted myself to ...'The Supreme Commander of steroid intake'.. but in light of the wonderful input from yourselves I have sacked myself from that role with immediate effect!!
Thank you again... you are Gods gift to the rest of us mere mortals. Words could never convey the depth of my gratitude.
I so hope that you all are recovering as well as you can from your own positions in connection with this horrible disease..
Kind Regards
Rob
rjw
Posted
Many many thanks
Rob
mrs_k
Posted
That is one big relief to read your last post - PMR thank goodness.
15 or 20mg will do for the PMR till you see the Rheumy
One question to ask him, why Calichew - have you had a Dexa scan (bone density measure) if not ask for one and if its OK - drop the tablets (least tablets you take the better.
Very relieved you stopped the AA - they have to have a very very good reason before you need those ones.
One thing, I am so glad you posted your question - and keep on doing so - the more knowledge you gain the better you can deal with this and, guess what, men get less side effects and generally recover quickly, providing they behave themselves.
I can now sleep easy.
EileenH
Posted
I'm going to disagree with MrsK for a moment - I think she had a typo! You need the calcichew (the calcium and vit D supplements) whatever a dexa scan were to show. The habit in the UK it seems is to use AA to prevent any loss of bone density - but the guidelines say that it is only necessary from the start in over 65s or people who have a proven osteoporosis. To know that you have to have a bone density scan - a DEXA scan, a special type of radiology scan. You've read our opinions - and my rheumy here doesn't use AA without good reason, just calcium and vit D - but he insists on that. I see no problem with it being used for people with low bone density - but I think it is appalling medicine to use it prophylactically given that you might need it later in life and the more you take it the more the risks are there. You have been on lots of steroid so a dexa scan really is called for. Then maybe the AA - if needed. But not for more than 5 years at a time without a break is the current FDA recommendation.
Are your pred tablets pretty red ones? Or bog standard white ones? If you have the coloured ones they are enteric coated and don't irritate the stomach - you could do without the lanzsozrapole. It's to stop you getting an upset stomach with the ordinary white pred. MrsO can't take it and swears by a live yoghurt every day - no stomach problems after starting at 40mg 4 years ago.
If you try 20mg tomorrow and it works - why go higher? If it's dodgy, try 25mg. Think hard about what you tell him - he might get very upset, medics can be like that - but if you are fine at 20 or 25 there is no absolute need to fess up. Just don't try it again, there's a good chap. If I wasn't already a natural white blonde I'd have been one by now :roll: And poor MrsK - bet she needs a medicinal brandy tonight!
Tell us how you get on though,
Eileen
Mrs_G
Posted
I certainly havent heard of anyone doing that !! None of us wants to take steroids but we take them as we want to live as normal a life as we can and I do remember the pain of not being able to get out of a chair or crying when I tried to turn over in bed in the morning so to me steroids are a necessary evil
We are all surprised that you have been put on 40mg and not 20 the normal start doseage but some people who take a long time to diagnosis do end up with much higher ESR&CRP levels I would ask the Rheumy why you were started on twice the guideline doseage
I think all you have done by your upside down way of treating yourself is delayed your recovery so Im glad you havent carried on for too long
The idea is to hit the inflamation hard get the bloods down and then do a reasonably quick reduction to get you to about 10 and then slow down and you should have blood tests before each reduction to show that the plan is working My Dr always says if I get a flare to hit it hard and when I have tried to creep up the dose she has always been right !
I personally would go back to 20mg and see if you feel well on that if after 2-3days on that and you still have pain the doseage isnt high enough but I hope it is
This is a variable illness with my first bout I went from 20mg to 1mg maintenance doesage in a year with no problems but this 2nd bout will be 3 years in Oct and Ive been at 4 back to 15 to 2 back to 4 and so on
So be patient and go with the flow of it and I think you will feel better
I no longer take AA and if i had read a lot about it I never would have !! Say you want a Dexa scan first I found an American website with about 1000 people with probs earlier in the year ! With my first bout it wasnt given but now my Dr said the theory is prevention not cure but when I told my Dr I wasnt taking it and why she said she has a patient who blames her cancer of the Osophegus on it
I hope we will hear in a few days you are on 20mg and feeling better !!!!!
Your Rheumy will be tearing his hair out with you The only way most of us self medicate is by slowing our reductions down not speeding them up !!
Best wishes
Mrs G
MrsO-UK_Surrey
Posted
I just did a post to you and lost it!
Anyway MrsK and Eileen have come back in with their great advice and recommendations so suffice for me to just add one tip for you:
As Eileen has said, I couldn't tolerate either the Lansoprazole or Omnaprozole stomach protection pills so have eaten a live yoghurt daily with my breakfast in order to line the stomach prior to taking the steroids, and it has worked a treat. Plus you will have the added benefit of the extra calcium to help protect your bones. If you like oily fish such as sardines, mackerel, salmon, trout, then several portions of these a week can also help to reduce the inflammation.
Once you've increased back up on the dose, you should feel a great improvement within a week or so but do remember to give yourself some TLC for a while and be careful not to overdo things just because you suddenly feel better - listen to your body!
Don't for one moment worry about or apologise for posting about yourself - that's what we all do and that's what the forum is for....I'm just so glad that you did post today!
Now I can relax and join MrsK and Eileen in \"sleeping easy\" tonight! :zzz:
MrsO
Nefret
Posted
I have come into this very late and everything has been said by our gurus.
On reading your first post I didn't know whether to laugh or cry and I was so glad that they got in quickly and explained.
It's the second time this week I have been left speechless.............wonder if there will be a third?
Nefret/Catie
mrs_k
Posted
Yes it was a typo meant to type AA.
Ta Eileen - keeps everything on track.
Fuzzy head today and was just taking it easy when I read Rob's post, I nearly fell off the chair.
Sun shining here with storms just 15 miles away - so I have to water the garden again.
EileenH
Posted
I think Rob's post got some heart-rates up!
Catie - the mind boggles what will be next...
Eileen
rjw
Posted
How can I ever thank you... I pledge that should I ever win the lottery you will never want for anything... well other than a cure for PMR/CGA of course. You will never know just how much your support has meant to me.. I do not know what would have happened to me long term if I had not come across this forum and the wonderful people on it. I would have carried on stumbling around in the dark, making terrible choices and decisions, and put myself back to square one. Whereas now I have only put myself back to square two!!! Throughout my life I have been hyper active, in an adrenaline sense, both physically and mentally, have always been 100 mph, in full control of my life and decisions... and then out of the blue this lightning struck. Whilst my GP and Rheumy have been supportive from a functional sense, the true and pure support has come only from yourselves. The emotion behind your messages truly touches, and melts my heart. Thank you all again.
I am very sorry that the action I took in going dowm my blind alley of 'bottom up' dosing caused most of you some distress. I apologise for that and the effect that had on you...but in true legal terms I have now got off of the naughty step....having served my time. I have no intention of ever being a repeat offender. It is from now.... 20mg, which I took this morning, stay on that till I see rheumy in 3 weeks time, then stick to his plan whatever that may be, to whatever timescale that may be.
The question asked of me as to what colour my pred tabs are...they are all 5mg, white, and not enetric coated.
Strangely enough my body feels worse this morning so the 7.5mg dose was probably totally inadequate anyway. Also, I expect the stress I caused yesterday to everyone, didn't help you or me!!
When I was on the 40mg dose, I could stretch in bed when I first woke up, which was nice, whereas now, the second I go to stretch my body in bed, my rear thighs, forearms, and biceps, scream in agony.. so I cant stretch at all...I presume this is the norm if you are not on a high enough dose of pred? My medical knowledge extends to me saying biceps..but rear thighs... I have no idea if they have a name or not, I thing the front thigh is called thigh...but the big muscle at the back of the leg, is that called rear thigh or does that have a posh name!!
The other muscle that I can never explain that is always bad and painful for me, is the one at the front of both legs, which joins the leg to the body.Its the little one that if you were sitting down, is at the very top of the leg, on the front, which joins the body. That muscle screams if I try to lift my leg off of the floor whilst sitting. My knowledge of the body is top class eh.. shall I take a bow now!!!
So I gave my liitle 20mg tablets a talk before swallowing them this morning..I said...\"listen here my liitle army of preds..my forearms, biceps, rear thighs, hips, shoulders, and front top leg muscles are in great trouble and are under attack...its about time the empire struck back, so...Go get 'em boys\"
Lets hope my little team talk works!!
A message for the day to you all....May all those that work for the light, and come from the light, soothe your worries away, may they gently cradle your aching bodies and infuse you with love and healing energy. May you, and all those close to you, be surrounded always in joy, love and abundance.
Love and gentle hugs
Rob
EileenH
Posted
I thought you went to the gym? I thought all blokes knew about quadriceps (front of your thighs) and hamstrings (back of your thighs) and gluteals (the ones up into your buttocks) ... I stand corrected :wink:
You should find that you get pretty good relief after a few hours. When you wake up in the morning DO try stretching, but very gently, not the usual get your fingertips as far apart as possible in the shortest possible time. Some people find getting in the shower and then stretching helps. Others use an electric blanket before they get out of bed to get nice and warm and then start mobilising gently. As the day goes on and the blood flow to the muscles gets going the stiffness will improve. The morning stiffness is because you have been in bed not moving a lot for so long and the phenomenom called gelling has set in. This also happens in untreated pmr when you sit for a short time and then have to get going again - it's one of the very typical things. You can deal with it all by using a really high dose of steroids as you found - but that is now accepted as not necessarily a good thing - it feels nice and you have loads of energy but the downsides longterm aren't as acceptable.
You are an intelligent being - use your enforced leisure to learn a bit about your body. You can find good basic anatomy texts online, aimed at children so very understandable however little biology you know beforehand. That isn't being patronising - I've worked in the medical field all my life, I know how much my knowledge differs from someone who did business studies or whatever, and my aim now is to make it understandable to them. Knowing a bit helps understand what is happening to your body and whether things are improving or not - it's not always obvious!
Have a much better day!
Eileen